need info

[bicron101]

I began having seizures at 2 years old. They began with a fever. Eventualy I began getting more but they were different. I started having them in my sleep. I was told I would grow out of them eventualy. They did go into remission for about 11years but this last year I began having them again. I have also had them witnessed so I know more about them but the drs are not taking me seriously. They start in my sleep. Apparently I gasp for air and sit strait up before falling back down, shaking and gurgling. When I wake up im disoriented and have been witnessed wandering around and doing things that make no sense. I have been told I am unresponsive. Eventualy I go back to bedm when I actually wake up I suffer from lack of motor control. I have trouble walking, talking and usually still suffer from confusion.
the last time I had one those effects lasted days. I need answers. If anybody has any info I can use when I report back to my dr I would apreciate it. They only done an eeg test so far. Im waiting for a new neurologist because the last one put me on frizium and my seizures got worse. She doubled my dosage after every seizure and I went from having 1 minor one every month to having 3 bad ones in a week. When I said I wanted testing done sge refused and said if I stopped taking the meds she would pull my licence ( I never have seizures while awake and I dont drive while suffering from the after effects of a seizure). I have kids and a job and they are begining to cause big problems in my life

 

[arnie]

Hello and welcome. It kind of sounds like you do need a new neurologist, what with the history of seizures and then the episodes that you are having now. Your post was very cogent and concise. I would suggest that when you see your new neurologist you take a printed copy of that post with you and let him or her read it just exactly as it is written. Presumably they will also have a copy of your medical records to refer to as well, for background, but your post pretty much says it all and it seems to me that it might be more compelling if they read it instead of hearing it, if that makes sense. There are tons of seizure meds (which vary widely in their effectiveness) and lots of tests for seizure activity (which also vary widely in their ability to pinpoint seizures). Anyhow, I hope you can get to a new neuro asap. If for some reason you can't, you might take these two posts to your current doc and see what she says. Keep us posted!

 

[Nakamova]

Hi bicron101, welcome!

What you describe sounds like Complex Partial seizures. I agree with arnie, you need to see a neuro who will be responsive to your concerns. Can you ask someone who has witnessed your seizures to write a complete description of what they saw? Any chance you can video them? That might be helpful for the neuro.

You might also ask about having an overnight sleep study done -- that might give a better sense of what's going on -- in addition to EEG information, it could show if there contributing factors such as sleep apnea.